Refractory incontinence in children: Is there hope?


Incontinence refers to the involuntary leakage of urine or stool and has major physiological, psychological, social and financial implications for patients. These implications are even more pronounced in children due to their longer lifespan, increased healthcare costs, associated comorbidities and lost productivity. Treatments for incontinence include behavioural therapy, pharmacologics and surgery. Most children will get better with behavioural therapy and some will respond well to pharmacologics, however, approximately 1% of patients will remain unresponsive to either and they are classified as having refractory incontinence. In the current state, children with refractory incontinence are eligible for major surgeries that are potentially irreversible and carry high morbidity. However, other alternatives to surgery are available, but these therapies are currently unavailable in Canada for the treatment of children.

The objective of this project was to use a patient-centric approach to determine the appropriate patient-approved incontinence therapy to improve patient’s quality of life. We focused on neuromodulation therapies (SNS, TENS) that are available for adult population but not approved for the use in children in US or Canada. These therapies use electric current to stimulate sacral nerve and impose proper voiding habits. While TENS uses outside electrodes placed on the skin, SNS requires implantation of a lead (with electrodes) and a controller, necessitating surgical intervention. Because of this, it is unclear if patients and their caregivers would be willing to undergo these treatments. Therefore, we performed a needs assessment study to document patients’ experiences with their symptoms, their struggles, frustrations, and successes and failures with currently available therapies. In addition, we determined patient willingness to undergo neuromodulation therapy. In the meantime, we investigated and initiated the process of implementation of neuromodulation therapy at the Hospital for Sick Children (HSC), first, as a pilot project and eventually, a permanent neuromodulation program. We believe that patient-centric approach will lead to an increase in quality of life of patients suffering from refractory incontinence and it will be beneficial not only to patients, but also to their families and the healthcare system leading to the decrease in the long-term effects
and costs of refractory incontinence.

Capstone Team: 

Joana Dos Santos
Edyta Marcon
Reza Vali


Capstone Advisory Committee:

Sickkids Parents and Children’s Bladder and Bowel Dysfunction Advisory Board (3 to 5 families)
Dr. Darius Jehan Bagli
Dr. Dean Elterman
Dr. Martin A. Koyle


TRP Faculty Lead:

Dr. Richard Foty